Fighting NF2 | The Salazar Family Success Story
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- Опубліковано 1 жов 2024
- This is one of our most unique and memorable stories captured on video-Fighting NF2: The Salazar Family Success Story. NF2 is a rare genetic disorder that causes tumors to grow along the nerves which can lead to various hearing, balance, and other physical issues. In partnership with the Change Reaction, the House Institute was able to bring patients Emit and Eleah Salazar from Texas to House Institute in LA for treatment. Join us in watching them overcome their struggle with NF2 and in providing hope for all those burdened by the disease.
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My brother passed away yesterday 4.4.2023 at age of 34 fghting with NF2 all his life.
Suffering from this disease , mentally and emotionally broken 💔
I am also suffer from acoustic neuroma nf2 ,with facial paralysis, a a less hearing loss and balance problem, since last 2 years , go threw gamma knife, but now micro surgery,is there complete recovery these problems after micro surgery or not please reply sir,
General info: Stereotactic Radiosurgery of various kinds has been reasonably successful on vestibular schwannomas aka acoustic neuromas since the late 90's though this method is often not successful in killing the blood supply to these tumors over 3.5 cm due to their proximity to the brain stem. Often, after medium success from this treatment, surgery is needed in an attempt to "de-core" the tumor. If there are bilateral tumors larger than let's say 3cm, then the added risk of pressure on the brainstem is present. Recently Harvard Medicine is looking into using Mifepristone, a drug currently FDA-approved for chemical abortion to kill the tumor cells. Damage to the trigeminal nerve is fairly common with invasive surgery protocols and this risk should be seriously considered when trying to mitigate the growth of NF2 tumors near the brain stem. Often, due to edema of the brain tissue following surgery, the suboccipital area of the skull is not replaced to reduce complications.
It sounds to me like you have been through the stereotactic route based on your present problems so I would certainly look into the Mifepristone. Here is a link for more information on that. They may have a blind study going on at present. If your insurance balks at covering this by calling it "experimental" , please ask your surgeon to help you write a letter to the insurance company to challenge their finding. Insurance companies routinely reject new treatments as a matter of routine to save money so don't let them get away with this. Good luck.
so today I found out that I have nf2
Stereotactic Radiosurgery of various kinds has been reasonably successful on vestibular schwannomas aka acoustic neuromas since the late 90's though this method is often not successful in killing the blood supply to these tumors over 3.5 cm due to their proximity to the brain stem. Often, after medium success from this treatment, surgery is needed in an attempt to "de-core" the tumor. If there are bilateral tumors larger than let's say 3cm, then the added risk of pressure on the brainstem is present. Recently Harvard Medicine is looking into using Mifepristone, a drug currently FDA-approved for chemical abortion to kill the tumor cells. Damage to the trigeminal nerve is fairly common with invasive surgery protocols and this risk should be seriously considered when trying to mitigate the growth NF2 tumors near the brain stem. Often, due to edema of the brain tissue following surgery, the suboccipital area of the skull is not replaced to reduce complications..
i had radiosurgery for 2 acoustic neurinomas (1998/1999 years) and it was big tragedy.It gave me only epilepsy seizures and one tumor shrink more and more.Now is 4,5 cm big and microsurgery will be tragedy after this f..ng radiation.
Is it possible vestibular shwanoma shrinking without any treatment.?
Not as of the year 2000, Though some pundits of Chinese medicine say that certain prescriptions such as those containing scorpions can arrest the growth. This was not the case with my wife. That said, attempts to "de-core" the tumor have some success in killing the vessels that provide its blood supply with tools that create extreme vibrations. Schwannomas are dense and often send ganglia into the surrounding tissue, unlike an encapsulated tumor. Stereotactic Radiosurgery of various kinds can often produce the best result if the tumor is under 3.5 cm.
It's so painful.
What hurts me people doesn't understand me.
I understand because I am also suffer from the last 2 years
@@htube9417 40 years for me.
My 13 year old son is going through nf2 now he is in radiation treatment no the Dr don't think it will work but they want to try anyway. They cut his head open a year ago now it is growing out of control he is trying to stay strong I don't know what me and his mother is going to do I am disabled and she got laid off the week we found out he was to start radiation I am trying to sell everything I have to get us a car even started a GoFundMe nothing is selling know one is donating
@@robertmckelvey3091 after radiation,what symptoms are available in patient , Norma or critical
@@christybrown3716 life is threating with nf2 ,😔😔